The heartening story of Melissa Swinbourne

UniSA Health science student, Melissa Swinbourne finds a way to return the favour to the organisation that supported her and her family through a very stressful time.

Born with the congenital heart defect, Aortic Stenosis, Melissa didn’t required corrective heart surgery until 2009 when the narrowing aortic valve to her heart became severe.

As paediatric heart surgery is not performed in South Australia, Heartkids was able to provide the financial and emotional support to get Melissa and her family to the Royal Children’s Hospital (RCH) in Melbourne.

Seven years later at age 22, Melissa gets the chance to return some support to Heartkids by renewing their travel resource for families.

Heartkids SA/NT Family Support Manager, Melissa McCormack says the resource Melissa is working on is very important for their families.

“The resource was developed many years ago and was extremely valued by our community of families having to travel to the Royal Children’s Hospital for Open Heart Surgery, however it has not been updated in the past 3-5 years,” says Ms McCormack.

“As a charity we are obviously quite time poor and updating this document has unfortunately not occurred.

“The resource will have information in response to the many questions families often have, such as the services at the RCH, transport around RCH and a families general guide to Melbourne.

“The tool is really useful because we have families that have never been to Melbourne, and if they have they don’t generally know much about the hospital, where it is and what’s located around it.

“We really appreciate the work that Melissa is doing for us especially since she was/is a Heartkid because it makes it far more personal and she has a connection to us and our work,” Ms McCormack says.

Melissa’s story

I was diagnosed at birth with a congenital heart defect called ‘Aortic Stenosis’ which is a narrowing of the aortic valve in my heart. This means that my aortic valve doesn’t open or close properly which requires my heart to work a lot harder than it should to pump blood efficiently. The failure to be able to properly open and close the valve also means that small amounts of blood leak back into the ventricle, leaving me with a characteristic heart murmur, heard when listening to my heart through a stethoscope.

Since birth I had been going to the Women’s and Children’s hospital once every 2 years to monitor the narrowing, always getting the same feedback “it hasn’t gotten any better but it hasn’t gotten worse”. However, during my appointment in 2009 they found that the narrowing had become severe, which was putting my heart under a lot of stress so I would need corrective surgery as soon as possible to fit it. And this is where I met Heartkids.

Heartkids were able to provide emotional support and financial assistance to my family and me. They organised our flights and out-of-hospital accommodation, and provided me with some comfort items like coloured pencils and paper to keep me distracted and busy during my hospital stay. As the doctors could not tell exactly how damaged my valve was, initially they were unable to tell what procedure I would need, if I would need a valve transplant, how long I would be in hospital for or how long I would need to be interstate for, so it was extremely reassuring knowing that there was someone to help sort all of that stuff out so we could just focus on the surgery.

Overall, it was such a whirlwind experience. I spent 10 days in Melbourne, 7 of which were spent in hospital and then I was home again. Thankfully I recovered really quickly and had no complications. The surgeons there are incredible, they did a fantastic job and my heart is now in the best condition it’s ever been.

Heartkids’ support was truly invaluable. Neither I nor my parents had been to Melbourne before, let alone experienced all the events that come with preparing for surgery so it was extremely comforting dealing with an organisation that was so familiar with all the aspects travelling for heart surgery involves.

Since my surgery, I have had this urge to pay them back for all the support I received at what probably will always be one of the scariest times of my life which has lead me to this project.

I’m currently helping to develop a resource with Heartkids SA for families with children who have to travel to have corrective heart surgery.

Heartkids is an Australian not-for-profit created to support children with heart disease and their families by providing services like care, research, education and support. One of the most important responsibilities undertaken by Heartkids is their support for the children and families who require surgery. Unfortunately, paediatric heart surgery is not performed in South Australia so all children living here and in the Northern Territory, who are also supported by Heartkids SA, are required to travel to the Royal Children’s Hospital (RCH) in Melbourne for surgeries.

The resource will be based on of a travel booklet which Heartkids SA developed in 2011 and will provide children and their families with information on a number of areas including accommodation, facilities of the hospital, things to do around Melbourne, financial support, and mental health support to hopefully ease a number of the concerns the people involved typically have and create a more supportive environment during what is a scary time.

I’m studying a Bachelor of Health Science, minoring in allied health and health promotion. I was actually led to Health Science after being inspired by my heart surgery journey and how complex but interesting the Australian Health care system is. I originally came to UniSA with intensions to study medical imaging but after not getting the initial ATAR, I fell into health science and haven’t looked back since. I have really found my niche in Health Science and have developed quite a passion for community level health promotion.

Community Service Learning Project was actually the only core course within the health promotion minor, which unfortunately isn’t offered any more, but that is how I came to get involved with the subject. During CSLP1 I worked on the trial run of the Holden Hill Community Café and loved it. I loved how it allowed students opportunities to use their tertiary education to actively make positive impacts within communities and get to know community groups they may not necessarily be familiar with. From the course I was able to get volunteering experience and even better that it was in my local community, improve my writing skills, and was able to learn a lot about myself through the reflective components of the course.

Having enjoyed the experience so much, I was eager to enrol again and see what new experiences I would immerse myself in. After looking through the website to see what opportunities were available, I didn’t find myself being drawn to any in particular so decided to negotiate a project.

Having developed this urge to pay Heartkids back, I had been constantly looking for opportunities to work with them and this subject provided the perfect opportunity.

I first contacted Andrea Duff, the course coordinator, to ask her how to go about it. Then I contacted Heartkids and a meeting was set up from there.

In the future I hope to be working in health promotion officer- type roles for not-for-profit organisations like Heartkids. I have developed a passion for delivering health-based projects or information to the community through my placement with the UniSA Sport and Development program and my Community Service Learning Project experience. Through delivering these projects I have also found that I really enjoy public speaking, which Andrea has helped me to develop further this semester so hopefully a career with these qualities presents itself to me.